I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
One of the scariest life changes a patient anticipates upon receiving a diagnosis of Friedreich’s ataxia is the use of a walking aid.
For me, the thought of needing a device to get around in my day-to-day activities was soul crushing. I thought that it signified the end of my life as a “normal” and healthy person.
I knew I needed a walker when my falls became more frequent and out of control. At the beginning of my FA-related balance symptoms, my “falls” were more like stumbles or bumping into things. I would find random bruises on my body, but that was about it.
Then, with my falls, I started ending up on the floor, usually with a minor injury such as a tweaked knee, a jammed thumb, or a sore shoulder. Then I had the BIG fall, the one in which I obliterated my ankle, requiring two metal plates, 13 screws, and eight weeks in a wheelchair.
While using the walker during my recovery, I became extremely frustrated. Walking was incredibly difficult, even with the walker. It didn’t feel like an “aid.” It felt like something I was just pushing around while I continued to struggle.
My physical therapist spoke wisdom that affected my life during my recovery. She told me, “You have FA. Walking will be hard for you no matter what, with or without the walker. The walker won’t make walking easier, but it will make your walking safer. Think of it as fall prevention instead of a walking aid.”
Despite my stubborn fear of “becoming dependent” on my walker, I decided to start using it all the time. My friends in the FA community told me that I would come to appreciate the walker for the freedom, safety, and independence it provided. That seemed so backward to me. How would becoming dependent on an assistive device give me independence?
A couple of months later, I now see what they mean.
Before I started using my walker in public, I would find myself waiting for someone to lend me an arm or to bring me something to push, such as a stroller or a shopping cart. I lacked the confidence and ability to do anything by myself. Now with the walker, I can go to my son’s preschool to pick him up by myself. I can run in to grab dinner to go by myself. I can hop up and walk to the kitchen for a glass of water by myself.
I’m not paralyzed with fear anymore. I know that I can safely accomplish my day-to-day tasks with my walker.
Yes, I know that falls are still possible even with my walker, but that possibility is greatly reduced since I surrendered my stubborn pride and become dependent upon my walker. I have renewed independence. I can be “normal” again! And the adjustment wasn’t nearly as hard as I thought it would be.